Table 5 Quotes of interview participants that illustrate their experiences and perspectives on the outcome of the project and future steps

Evaluation of the outcome

4A

“When you organise such a thing with a specific goal and you have a sound process, well yes, if you then, if you decide to participate then you support the process and, well i think, you then also have to accept what comes out of it.” (R114_o)

4B

“I remember, especially the last meeting, we had a top, we made a top 10 in one subgroup and then there was a girl who was a JIA patient. What do you think of it we asked and the whole top 10 was turned around. Nobody would [..] contest it, everyone accepted it. That was nice to see.” (S5_c)

4C

“Definitely no decision that I opposed, because then I would have said so. Some nuances I would have done differently. But if I have made the suggestion and it is not picked up, that’s absolutely fine. I don’t think it’s a problem to just go with it.” (S9_c)

4D

“I can’t deny that such a top 10 is important for research funding. In that sense, well yes at least that is what I think, I won’t deny that I solely participated out of interest, I also wanted to put forward my own research topics.” (S5_c)

Future steps

4E

“I recognise the list, in my anamneses, I see regularly, the same sort of issues. I don’t think that the top 10 is shocking or a complete surprise, this is what you could have expected.” (R116_c)

4F

“It is a wonderful process, but if the process is to give people the impression that they have an influence and subsequently nothing is done with it, then I consider it pointless. A waste of time, because it costs much time and money, these sort of things.” (R114_o)

4G

“Look, we have to hope that people become enthusiastic and funding will be arranged, that questions will be picked up and there will be answers. Well, some of these you can’t really answer, but maybe a beginning that helps a bit.” (S8_o)

4H

“I think it is important that the future research will pick up the top 10, and that to funders we can say: hey listen this is a top-10 question and it’s important to fund this, because it’s what patients want. I hope that it can help in writing new funding applications and well that the top 10 is included when we are making new plans.” (s14_c)

4I

“That’s why I think it is important that well if our research agenda is finished, because the agenda does officially contain 10 questions, but they are not research questions. The James Lind Alliance refers to it as unanswered questions, but they are more like research topics. They are too broad for research. From each of those questions you can still formulate 10 different proposals that supplement each other.” (S1_o)

4J

“If researchers would pick it up, you have solved a part, but not all. Because they can still interpret the question in their own way. While it was not the intended question, you know. Well, I think it is important that in the next steps that patients are similarly included.” (S7_p)

4K

“ [..] my expectation is that it will be a large task to come from the question on place 1 to a sequence of good research, which also will provide the answer. Because that is what you want. Sooner or later you want to check the box behind question 1.” (R116_o)